Is phosphorus an issue for you?

[Sara]

How have you been affected by phosphorus? Have you heard of it? Is it important to you? Do you want to know more? These are some of the questions focused around phosphorus. We invite you to share your thoughts and experiences.

[pal]

I heard of phosphorus. My renal doctor told me that my phosphorus level is within the range and he told me not to worry about it. I have read that high phosphorus level will cause itching. Is it true?

pal

[I Am Blessed]

Originally Posted by Sara

How have you been affected by phosphorus? Have you heard of it? Is it important to you? Do you want to know more? These are some of the questions focused around phosphorus. We invite you to share your thoughts and experiences.

Please tell me, on the blood work papers, what abbreviation is Phosphorus? I mean, the chemical name. Thank you.

[jeffmoore]

Hello Sara,
I have been living on dialysis for almost two decades, and yes, I have serious issues with my phosphorus levels, I didn't develop all the effects of high phosphorus levels in the body, but on occasions I would have uncontrollable itching. Sometime the itching would get so bad that I had to take 50 mg. of benadryl to relieve the agonizing of the itching. There was times when I would itch so bad, that I would leave all kinds of scars on my body, especially my legs and arms. You can truly itch in any part of your body when that phosphorus is at a high level in your body, keeping the phosphorus under 5.0, is quite challenging, my problem was that I adore all kinds of cheeses, I don't particularly like yogurt or milk, so that wasn't the problem with my high levels, but also eating nuts and beans, could also potentially raise the phosphorus levels in the body. That is why I question the fact, that all these years phosphorus has been a major problem for dialysis patients, that they would by now include phoshorus as part of the nutritional facts on products, it is almost like you have to guess how much phosphorus is in what. I talk about phosphorus extensively in my book "My Renal Life" - and I stressed this throughout the book - Please don't forget to take your binders, that is mentioned all through my book. For years and years I've been trying to perfect a proper low phosphorus diet with my large collection of recipes that I started collecting since the mid 70's, and of course in the last decade, I have been printing recipes from various Cooking Shows on TV. Sara, I hope that enlightens on the seriousness of keeping that phosphorus in normal range. Another thing I almost forgot, keeping your phosphorus in normal range, will help in keeping your PTH in normal range, and that is truly important. All in all, keeping the phosphorus levels to a minimum in your renal diet, and taking those prescribed phosphorus binders, will help in achieving this, but that is easier said than done, because any of us that began a life with dialysis, we didn't have to be concerned about phosphorus, we would eat as much as we wanted, and of course we probably didn't even have any idea how much phosphorus will were truly consuming. Sara, here is a breakdown of what can happen if the phosphorus levels are neglected in the body, (plus if a patient doesn't take their binders as prescribed: Of couse itching is the first sign, but if it continues to rise, you could develop brittle bones, you could get hardening of the blood vessels and body organs, which leads to a heart attack, and the potential for bone disease and calcifications in soft tissues, (such as the heart and lungs) You can also get severe pain in your joints and bones, and also red eyes. Calcification can develop in the eyes, foot, etc., I saw a display of this at my unit, and Girl, it is so hideous, that truly frightened me, that is why I try my best to watch my phosphorus levels as much as possible. Also foods like Ice Cream, Chocolate, Peanut Butter and Chowders need to be limited also to keep the phosphorus low. If you want to talk about this further, I'm always willing to share my extensive knowledge of the mineral phosphorus. I don't mean to frighten you, but I got to be real, Phosphorus is very much an enemy for renal and dialysis patients.
Best Regards,
Glo

[ddarling]

Tell us more!

[Marina]

Some people think that itching is the only problem with an elevated phos level, but NO, itching is the least of the problem.

HIGH phos levels affect the bones and the cadiovascular system. Ideally we should have our phos levels in the mid 3's to avoid CV complications.
I agree with Jeff, TAKE YOUR BINDERS religiously. Think you're saving your heart and you'll never forget to take them.

Rule of thumb as far as packaged foods and phos, the more INSTANT and ready to eat they are, the higher the phos contents.

From what my PD nurse told me, the FDA has decided that all manufacturers must include amount of phos on label.

[lectropet]

My report card came out last Friday and my phos levels were low looked low but for the amount of itching that was going on while on the dialysis machine. Oh man I was in so much pain the itching was driving me insane. I was about to ask them to stop the dialysis that I couldn't take the pain any more. It only happens when I am on the Hemo dialysis unit. what gives with that.? I sit really close to an A/C duct and the cold air blowing down on me feels good and I raise my tee shirt a little so the cold air blows down on my tummy. I take a couple of benidryl pills before I go to dialysis and I take a couple more after they put me on the machine but the itching starts about an hour into the dialysis. I didn't take any more pills. Ok I am going to find my report card with the blood test figures and read the Phosphorus level. Last month the phosphorus levels were 6.1 and this month they were 5.5 but the calcium went up to 10.5 too high and they were after me. So I was telling them to help get the itching under control. I was told by an allergy Dr. that I couldn't eat wheat flour, egg whites and milk. and I wasn't drinking any milk unless at the restaurant they gave you these little cups of creamer for the coffee. So I stopped drinking the coffee and the creamer and breads and eggs and . I stopped eating everything but fish, chicken, green beans and rice. WE just got back from a camp out with a church group and Saturday night there was a pot luck dinner and my wife went along with me telling me you can't have that you can't have this like I am some little kid. Friday the dietician told me well I could eat sour dough bread and white bread and so I told her I stopped eating everything. I need to lose weight anyway. AND THEN WEDNESDAY I saw the hemotologist and he told me after I told him about all the foods that I stopped eating. He tells me that it is the medicine you are taking. It isn't the foods. Well I am not on that much medicine and I stopped taking that for a couple of days and during dialysis the itch came back big time. I try to hold the left arm still because that is where the graft is and the needles are stuck into the graft. I try to hold that still. but the right hand and arm are busy rub ing anti itch cream on everything that they can reach. Back and stomach. You know what I don't itch like that when I am home. We are wondering if they at the center are not rinsing the machine enough. Is some of that rinsing solution still in the dialysis filter or is it still in the machine and it is getting into my body. Just wondering?

[I Am Blessed]

I'm going to ask again...what is the Phosphorus level listed as (it's abbreviation chemical name) on the blood work list? Such as Na is sodium, K is potassium, CL is choride....what is phosphorus?

Thank you

[Sara]

Good question. PO4 is the chemical abbreviation for phosphorus. You may see it on a lab report other education materials.

[Renalnewbe]

Yes, P04 is the correct symbol for phosphorus. On my lab tests when I had surgery it is written as follows:

P04 INORGANIC.............1.5 L (2.5-4.8) mg/dl under PLASMA


It was along with a measurment for MG, if that helps you figure out a lab report.

God bless

Vicki

[I Am Blessed]

Thank you, Sara and Vicki...P04 inorganic/MG is on my next order when I have blood workup done--that'll be next week. My current blood work apparently shows very little when it comes to knowing more about the important minerals and kidney numbers. A parathyriod panel will also be on the upcoming bloodwork, as well as a Vitamin D panel. My goodness, so much to think about, as if the three pages of current blood work reports isn't enough! LOL

[angieskidney]

Originally Posted by Sara

How have you been affected by phosphorus? Have you heard of it? Is it important to you? Do you want to know more? These are some of the questions focused around phosphorus. We invite you to share your thoughts and experiences.

Just saw this thread now. I met a lady once who was so effected by this that she developed a life threatening condition called Calciphylaxis! Hyperphosphatemia can lead to me and people don't realize the extent of the risks to not watching Phosphate levels.

Tune in and discover why it's important for kidney patients to know about it.
Podcast Link: http://www.netfilehost.com/kidneytal...laxis_128K.mp3

(That is a podcast directly from the Renal Support Network's KidneyTalk show)

http://www.rsnhope.org/programs/kidn...axis/index.php

Lori and Stephen visit with Sue Vogel, renal administrator, nephrology nurse, and board member of Renal Support Network, to discuss calciphylaxis, a condition affecting kidney patients and transplant patients.

You may be saying, “CalciphyWHAT?” Calciphylaxis (cal-si-fa-lax-sis) is a difficult-to-pronounce disease process that is very important for patients to know about. It involves a calcium and phosphorus imbalance in the body.

Listen to your favorite online radio show to learn about the signs and symptoms of calciphylaxis and what you can do about it.

For more information on calciphylaxis, go to www.kidneytimes.com.

[Wsman33]

I have been on dialysis for about 7 years this go around. I had a transplant when I was 15 yrs. My transplant lasted until I was 25. I was previously on dialysis from age 8-15. So age 25 I just go back on dialysis hemo this time, after 10 years of eat what I want. I decide i'm not going to follow any diet and I can do what I want. Well over time my Pth(thyroid) goes through the roof and my bones get weak, my skin breaks out pretty bad, I itch all the time, and all the other baddies that happen with really, really, high Phosphorus. This all took about 5 years to accumulate. Finally I have to go see an endocrinologist about my Throid glands in my neck, maybe have surgery to remove them because as I said earlier my PTH was through the roof like 1100 and it's supposed to be like low 200 range 233 I think. So we all decide to take out my thyroid glands and put one in my arm and schedual the surgery. After about a week I decide that i'm not going to do the surgery because it's not going ot solve my problem. I cancel the surgery and decide to go at it by way of Diet. So I quit eating the real bad stuff all together and take alot of binders. I still eat pretty much what I want along with taking alot of binders Renvela and Phoslo 7 all together with each meal or anytime I eat and my numbers are all where they need to be and i'm doing a lot better. My thyroid is within normal range. All that trouble from really high phosphorus. So I don't eat anything that can raise my Potasium really high and eat anything else I want just take a lot of binders. This may not work forever but i'll cross that bridge when it comes up.

[jeffmoore]

Originally Posted by Wsman33

I have been on dialysis for about 7 years this go around. I had a transplant when I was 15 yrs. My transplant lasted until I was 25. I was previously on dialysis from age 8-15. So age 25 I just go back on dialysis hemo this time, after 10 years of eat what I want. I decide i'm not going to follow any diet and I can do what I want. Well over time my Pth(thyroid) goes through the roof and my bones get weak, my skin breaks out pretty bad, I itch all the time, and all the other baddies that happen with really, really, high Phosphorus. This all took about 5 years to accumulate. Finally I have to go see an endocrinologist about my Throid glands in my neck, maybe have surgery to remove them because as I said earlier my PTH was through the roof like 1100 and it's supposed to be like low 200 range 233 I think. So we all decide to take out my thyroid glands and put one in my arm and schedual the surgery. After about a week I decide that i'm not going to do the surgery because it's not going ot solve my problem. I cancel the surgery and decide to go at it by way of Diet. So I quit eating the real bad stuff all together and take alot of binders. I still eat pretty much what I want along with taking alot of binders Renvela and Phoslo 7 all together with each meal or anytime I eat and my numbers are all where they need to be and i'm doing a lot better. My thyroid is within normal range. All that trouble from really high phosphorus. So I don't eat anything that can raise my Potasium really high and eat anything else I want just take a lot of binders. This may not work forever but i'll cross that bridge when it comes up.

Wisman33, I read your post about your issues with phosphorus, but what you haven't taken notice of, is that it can effect your heart and lungs in a very serious way. It sounds like you have a hard time staying away from such things like, too much cheese, Ice cream, nuts, chocolate, and coke cola, to name a few. Following the diet as best you can, will help you to maintain your good health with dialysis.
Glo

[tao3000]

[quote=I Am Blessed;26067]I'm going to ask again...what is the Phosphorus level listed as (it's abbreviation chemical name) on the blood work list? Such as Na is sodium, K is potassium, CL is choride....what is phosphorus?
/QUOTE]

My recollection of High School chem (a hundred years ago) sez Phosphorus is P.

The Periodic Table of Elements sez:
Atomic Number: 15
Atomic Mass: 30.97376 amu
Melting Point: 44.1 °C (317.25 K, 111.38 °F)
Boiling Point: 280.0 °C (553.15 K, 536.0 °F)
Number of Protons/Electrons: 15
Number of Neutrons: 16

Chuck---